I'm back from the ER

[ponygirlmom]

And I don't have any funny stories about it either, unless you count the nurse shrieking as my blood spurted across the room when she put in the IV. Apparently I can't even get an IV without being dramatic.

So why was I spending my Friday night in the ER? Well, if you've been following my ongoing saga, you know that my HR has been climbing; my cardio just diagnosed low hemaglobin and dehydration.

You'll also remember that exactly one week ago they drained a quart of fluid from my thorasic cavity.

Guess what? It's baaa-aaack! And it brought some little aquatic friends.

For the past few days I've been getting extremely short of breath, and the pain in my back has been getting worse. Then today when I was on the phone with my husband (panting away) I also had a bout of double vision, which has nothing to do with anything cardic (it's a migraine prodrome) but my husband decided, "You should go to the ER!" So he called... my Dad. Not because my Dad could do anything from across the country, but because he knew my Dad would tell me to go to the ER, which he did. And I'm like, I'm NOT going to the ER. I'm going to see my doctor on Monday! So I called my doctor and he said.... to go to the ER.

And it's a good thing I went to the ER, because doing rounds was a great cardio with a gaggle of residents in tow. He would ask a question, and I would think he was asking me, and I had to stop myself from answering because they had to figure it out for themselves. Everyone had to listen to my heart and figure out what was wrong, and they had to figure out if they thought I had Marfan's, and why I have tachycardia (high HR).

Okay, so you wanna know WHY I have tachycardia? Not anemia. (Okay, somewhat.) Not dehydration -- only, although my surgeon's dehydration plan is no more popular with this cardio than the one I saw on Tuesday. No, my heart is racing away because -- it's being squeezed by orange peel!!!

Okay, not literally. That was his visual. Imagine your heart surrounded by orange peel, squeezing it so that it has a hard time expanding and beating properly. So it just beats MORE. What an industrious heart! Which also makes the patient short of breath. Although not as short of breath as does....

The two quartz of fluid I have squeezing my right lung! (Remember when that was ONE quart, and they harpooned me for it?)

So what do you do about the orange peel (not it's real name)? You take lots of steroids, and hope that it goes away, because if it doesn't, you remove it. With knives. But those aren't the only sharp things in the OR. No, they are accompanied by the giant sternum saw AUUGUGUGUGUGUGHGHGHGHGH!!!!!!!

So these steroids had BETTER work.

The steroids are cool, by the way. They always make me feel super-good. And they are NOT the kind that are banned in Olympic competition, so maybe it's not too late to join the equestrian team. The US is actually doing very well in stadium jumping, but this morning someone from New Zealand had seventy-two faults, so I'm sure they'll want some help. I have the qualifications of a.) not being on banned steroids, b.) speaking English and c.) not being the person who earned seventy-two faults. I think I have a good chance.

 

[EireCara]

Oh dear, my heart truly goes out to you. Through your 'wonderful' humour I sense a scared and fed up woman. I am having daily bouts of 'tachy' all week so I know how that alone feels never mind all the other stuff you have going on. I will keep you in my thoughts and prayers that you get some relief soon and can get on with your life. ((((( HUGS )))))

 

[ponygirlmom]

Oh dear, my heart truly goes out to you. Through your 'wonderful' humour I sense a scared and fed up woman.

Nah, no scared. Just really, really pissed. (He-LO surgeon -- how could you have missed THIS?)

 

[EireCara]

Well, with your spirit alone you will soon be on the mend. (((( HUGS ))))

 

[Duff Man]

does anyone know the real name for the "orange peel" syndrome? Is it pericarditis?

 

[skeptic49]

Very sorry to read about your unpleasant Friday in the ER. I enjoyed (if that's the right word) reading your very humorous description of things. Good luck and hopefully the steroids will win the battle over the orange peel!

Jim

 

[khawkk]

Sending lots of prayers and wish I could just hold

your hand and make everything better.

 

[ponygirlmom]

does anyone know the real name for the "orange peel" syndrome? Is it pericarditis?

No; it's caused by pericarditis. I'll tell you when I look at my records of the visit.

 

[Ross]

I'm fairly sure he's talking about your Pericardium, the sack around your heart. The way he's talking though makes me wonder if your heart isn't overly enlarged or the sac is full of fluid also. Something is happening to make the fit tight. Did he say anything about doing a pericardial window?

 

[Karlynn]

You have had a very "exciting" post-op experience. I hope your life becomes very dull very soon. But you have a sense of humor that will pull you through. Best wishes.

 

[Superbob]

Sorry you have had to go through this -- the ER is never a fun place to visit, and sounds like it has been particularly traumatic for you. Glad you have been able to keep your wonderful sense of humor and I pray all with smooth out for you now.

 

[hall]

Sure hope they get all of this under control for you. I know this is frustrating to say the least. I hope the steroids take care of it. Prayers.

 

[Nancy]

Are they talking about restrictive/constrictive heart problems where the sac around the heart is causing the problems, or are they talking about a pleural peel problem in the lung?

Joe had both. He did have a pleural peel removed from one lung, and he also had restrictive/constrictive heart problems, but was too fragile to have surgery for that. They remove the sac around the heart.

Here's hoping that surgery is not necessary in any case. I am very glad you went to the ER instead of staying home thinking it was dehydration.

 

[ponygirlmom]

Sorry you have had to go through this -- the ER is never a fun place to visit, and sounds like it has been particularly traumatic for you. Glad you have been able to keep your wonderful sense of humor and I pray all with smooth out for you now.

You know, I definitely can't complain about the ER. a few years ago my daughter was in and out of our local ER several times before she was finally hospitalized, and that was just plain horrible.

Last night at the Mayo ER they took me quickly, the place seemed very quiet even though the nurse told me they were actually full, I had my own room and my husband and daughter were there playing on their computers, and both my nurses were really nice.

 

[ponygirlmom]

I'm fairly sure he's talking about your Pericardium, the sack around your heart. The way he's talking though makes me wonder if your heart isn't overly enlarged or the sac is full of fluid also. Something is happening to make the fit tight. Did he say anything about doing a pericardial window?

I think I may have this figured out. I think I got a few things confused last night. All I had on my mind at the time was: a.) I didn't have to be admitted, b.) the only drugs they wanted to pump me with were steroids, and c.) if the steroids didn't work, I would need surgery AAAAACCCCCKKKKKK!

So my brain remembers that the doctor said I don't have regular, garden-variety pericarditis, but my Dad (a doctor) says that the cardio was almost certainly describing constrictive pericarditis, which develops from regular (acute) pericarditis.

Here's a little map for those of you who need a scorecard, like me!

1. Like Ross says, the pericardium is the lining around the heart. When it gets inflamed, this is called pericarditis. An inflamed pericardium rubs again the outer layer of the heart, causing pain in the chest and back.

2. Common treatments for pericarditis are steroidal and non-steroidal anti-inflammatories. Steroids are more effective. However, there may be reasons why doctors want to avoid steroids. For example, doctors avoid giving steroids to patients with infections.

3. Pericarditis can progress into something worse. First, any fluids between the pericardium and the outer heart are absorbed. Then the pericardium starts to develop thick, stiff scar tissue (the "orange peel.") This restricts the movement of the heart. Since the heart cannot beat as efficiently as it should, it beats MORE instead. This is called constrictive pericarditis.

4. If constrictive pericarditis does not respond to steroids, they remove it! I don't know what they replace it with.

So getting back to Ross' question, in my personal case, my heart is not enlarged and I do not have fluid around it. I have scar tissue! Ew! Go steroids!

 

[SHEEPDOG]

Pgm

Pgm

Sounds like you got it figured out. All you said makes sense to me. I sure hope you get this settled fast so you can get on with life.

 

[ryen0]

Just wanted to say i really admire your attitude about all that you have gone through post op. You and everyone on this forum are in my prayers.

 

[Mary]

I think I may have this figured out. I think I got a few things confused last night. All I had on my mind at the time was: a.) I didn't have to be admitted, b.) the only drugs they wanted to pump me with were steroids, and c.) if the steroids didn't work, I would need surgery AAAAACCCCCKKKKKK!

So my brain remembers that the doctor said I don't have regular, garden-variety pericarditis, but my Dad (a doctor) says that the cardio was almost certainly describing constrictive pericarditis, which develops from regular (acute) pericarditis.

Here's a little map for those of you who need a scorecard, like me!

1. Like Ross says, the pericardium is the lining around the heart. When it gets inflamed, this is called pericarditis. An inflamed pericardium rubs again the outer layer of the heart, causing pain in the chest and back.

2. Common treatments for pericarditis are steroidal and non-steroidal anti-inflammatories. Steroids are more effective. However, there may be reasons why doctors want to avoid steroids. For example, doctors avoid giving steroids to patients with infections.

3. Pericarditis can progress into something worse. First, any fluids between the pericardium and the outer heart are absorbed. Then the pericardium starts to develop thick, stiff scar tissue (the "orange peel.") This restricts the movement of the heart. Since the heart cannot beat as efficiently as it should, it beats MORE instead. This is called constrictive pericarditis.

4. If constrictive pericarditis does not respond to steroids, they remove it! I don't know what they replace it with.

So getting back to Ross' question, in my personal case, my heart is not enlarged and I do not have fluid around it. I have scar tissue! Ew! Go steroids!

I have pericardial constriction. It was diagnosed about 8 weeks after avr in June, 2005.
Although the only real "cure" for constriction is removal of the pericardium, that is rarely performed. The removal is often a more risky operation than the initial valve replacement or other open heart surgery.
In my case, very careful management of fluid levels and attention to symptoms has allowed me to live a somewhat normal post-op life. It can be a delicate balancing act. I see the cardiologist every six months, my PCP every three months, and between the two of them I manage to stay on track.
Kathleen, another VR member, is the only other person that I am aware of who suffers from pericardial constriction. They did attempt to remove her pericardium but the results were mixed.
I have a bovine valve, so when it needs replacement, we will tackle both the valve and pericardium at the same time. I hope the steroids work in your case, and you go on to a full recovery.

 

[ponygirlmom]

I have pericardial constriction....
In my case, very careful management of fluid levels and attention to symptoms has allowed me to live a somewhat normal post-op life.

Oh, boy! Do I have questions for you!

What kind of fluid balance are you aiming for? The cardio I saw yesterday said that my problem had been made worse -- I'm wondering if it was even caused by -- the diuretics and fluid restrictions prescribed by my surgeon to deal with the fluid around my lung. I think I forgot to tell everyone that one of the reasons I was in the ER for hours was that they were pumping me full of fluids. Even after three days of re-hydrating (prescribed by the cardio I saw Tuesday) I was still dehydrated.

If your doctor has you restricting fluids, maybe we don't have the same thing.

What is a "somewhat normal" life?

Also, I was told something totally different about pericardium removal than you -- that it's not as dangerous as something like valve replacement.

 

[Nancy]

I guess you are proof that there can be pockets of fluid overload in the body, and still have dehydration.

My husband sometimes had this problem too. It is very difficult to deal with, a real balancing act.

I hope the steroids work for you, and that you don't have to be on them for too long.